Thursday, December 2

Narcolepsy and Your Marriage - When the Going Gets Tired

Image courtesy of David Castillo Dominici/FreeDigitalPhotos.net
Narcolepsy is hard on a marriage.

I believe this is because marriage is a lot of work. It's a responsibly, an agreement, a pact between two people, and it takes a lot of energy, both physical and emotional. When things are going well, it's a beautiful bond unlike any other. When it's falling apart, it can feel like a complete devastation of who you are as a person. 

This doesn't mean that marriage should be perfect. It would be unreasonable to expect that two imperfect people with differing backgrounds and personalities would never disagree. Healthy disagreements can even be good for a marriage. But no spouse should ever feel like a failure. 

I recently read a blog post that broke my heart. It's from the blog of a married man living with narcolepsy. In this particular post, he discusses how narcolepsy has created an insurmountable barrier between him and his wife. The post made me teary because I wondered how often my husband felt that way without me knowing it.

Yes, narcolepsy is hard on a marriage - any chronic illness would be - but it doesn't have to be the demise of a marriage if both partners are willing to work together. It helps to think of it as your marriage. Be protective of it, be willing to defend it, and be determined to let nothing destroy it. Then failure won't be an option - for you or your spouse.

Monday, November 29

Narcolepsy and the Guilt Free Girls' Night

A couple of weeks ago, I went out for a night out on the town. I got all dolled up, went out for dinner, and then to the theatre. It was a fun, lavish, wonderful evening.

My husband wasn't there.

When my friends first invited me, my automatic reaction was to decline. A night out without my husband? Without my toddler? Without guilt? Without worry? Without.... narcolepsy?

It was just what I needed. 

For the first half of the evening, I couldn't stop thinking about my husband. I worried if he was OK alone with our daughter, I worried that he wouldn't remember to take his medication, and I worried that he wouldn't remember to put the casserole in the oven on time. I went back and forth over whether or not I should call to check on him. I hoped that he wouldn't resent me for going out to have a good time while he sat at home. It turned out that all of my concerns were silly. My husband and daughter were fine. He put her to bed early and enjoyed spending some time alone. He was also actually relieved that I went out and had fun. It turned out to be a great decision for me, for him, and for our marriage. 

In an article that I often refer to about living with a chronically ill spouse, it recommends finding individual interests other than the illness. It also mentions having friends to spend quality time with. Both of these things will go a long way toward ensuring that the focus of your marriage is not the illness. I thought that was sound advice, but I never really put into practice until the other night. It really did make all the difference. It was a nice break for me... and for my husband. Just as I sometimes am emotionally drained from worry and concern, my husband gets tired of feeling like a burden. It's a relief for him to see me lighthearted and happy. 

When I later asked him why he didn't take the opportunity to have some friends over or something while I was out, he said something that really struck me. He said that he really enjoyed spending some time alone. I said, you always spend time alone. He added, 

"Yes, but this time, I wasn't asleep."

Thursday, November 11

Prior Insurance Authorization and Narcolepsy

This last hiatus from my blog was not a good one.

Several days ago my husband ran out of his medication. When he attempted to get his prescription refilled, our insurance company told us that he would he need to obtain prior authorization from his physician. That authorization is a real pain because the insurance company asks for it every few months - we never know when - and they won't pay for his medicine without it. Typically it takes a couple of days, but this time it took several. 

My husband's first day without his medicine wasn't intolerable. He was a little tired, but he made it through.

The next day, however, he was exhausted, irritable, and slightly depressed. It was as if he had a bad hangover.

By the third day, he was a zombie. He slept for the entire day, until I eventually woke him to eat something. After eating, he promptly went back to sleep. It had been a long time since I had seen him sleep for an entire day. I'd forgotten how scary it was.

Watching him go for days without the medicine he needed to function made me sad - and angry. I started to wonder, just what is a prior authorization anyway? Why is it still required after years of being with the same company, and getting the same medication?

A prior authorization is something the insurance company requests when they aren't sure they want to pay for your medicine. This is more likely when your medicine is very expensive, has an age-limit, or is not usually covered by insurance (among other reasons). Usually the insurance company sends a form to your physician, they fill it out, and send it back. Once your insurance company decides to pay for your medicine - or not - you may still have to get prior authorizations every now and then. You may need to get them every 3-4 months like my husband, or maybe once a year... it depends on the company.


Because my husband's authorization took longer than usual, I called the insurance company to complain. As his advocate, I wanted them to know just how detrimentally he was affected by their dragging feet. They approved the medicine the next day and today he's back to normal.

For now, I'm relieved, but I know it's just a matter of time before we'll go through this rigmarole all over again.

Sunday, October 24

Organization - the Key to Managing a Household

Recently I heard an entertainer (singer) discussing his daily routine. Because his work was all-consuming, he said that he just didn't have time for certain things, including everyday chores. Laundry, bills, scheduling... the mundane but necessary parts of life were tedious to him. In fact, he went so far as to say that he didn't even think about those things. Trying to cope with the tasks overwhelmed him to the extent that if left to him, they'd more than likely never get done at all.

He sounded just like my husband. 

My husband is not lazy and he certainly isn't a chauvinist. In fact, he's a good cook, knows how to do laundry, wash dishes, and has never once complained about doing chores or running errands. That being said, I am the household manager. I am primarily responsible for keeping the house clean, keeping our pantry stocked, cooking meals, paying bills, organizing our schedules, and other things that keep a household running smoothly. Over time, I've learned just how much this helps my husband function well. When he can focus on getting through the day without worrying about looking for clean socks or trying to find keys, he has a lot less anxiety. 

So do I.

Although I love being organized, I'm no Martha Stewart. Instead, I have my good weeks and my not-so-great weeks. There are definitely a few tools that make my job a little easier and actually make being house manager fun, though. Most of the time. My suggestions:
    1. A good calendar - more than one in our home. Use a large one. The more room to write, the better!
    2. A color key - write everyone's appointments in an assigned color to make it easier to find a specific item.
    3. A dry erase board - perfect for messages that may be important but temporary.
    4. Sticky notes - little reminders, daily reminders, on the bathroom mirror, in the car, on the fridge...
    5. Lots of designated spots for important things: keys, wallet, meds...
    6. Paper and pen or another dry erase board on the porch - if someone comes by when you're not home, this can be useful too.
    7. A medicine or pill organizer - again, more than one.
    8. A weekly or monthly menu - we just use a basic one.
    9. A grocery list based on your menu.
    10. Lots and lots of notebooks - these are invaluable for keeping track of stuff. It's even more helpful if you label them.
    11. Labels!
    12. Plastic storage containers in about a million different sizes.
    13. An organized laundry room - keep it simple, though.
    14. A laundry schedule
    15. An alarm clock... or two... or three!
    Different things work for different families. I've learned not to force my family to use anything that frustrates us, no matter how popular or clever it is. Instead, we focus on what will make life easier... for us.

    The singer I mentioned had a staff of professionals to help him organize his life. At times, it seemed almost like he took them for granted. Fortunately for me, my husband appreciates what I do. I know this because he tells me so all the time and he also shows me. Whether flowers or a card or even just a little note, I really feel like my husband values my help.

    That makes it all worth it, really.

    Sunday, October 10

    Caring for Your Narcoleptic Spouse - When YOU Get Sick

    So last week, I got sick for the first time in a long time. It started with our 3-year-old feeling crummy one day, coughing and congested, and then just 24 hours later, she was back to normal. Unfortunately, that was just the beginning of our household dealing with a bug that's been going around. 

    It was just a few days ago, when it took me two hours to make a cup of hot tea, that I thought - hey, I'm really sick. I hate to admit it to you dear readers, but I slipped up. I fell back into my old thinking patterns and I got angry. 

    Here's what happened:

    I was already tired. Taking care of a sick toddler is not much fun, lemme tell ya. Even if the toddler is an awesomely easy patient like our daughter. When I started feeling ill, I told my body, "Hey! We do not have time for this! Don't you dare get sick right now!" Maybe I shouldn't have tried the tough love approach because the next morning, I was in bad shape. Taking the day off was not an option. Yes, I work from home, but that doesn't excuse me from meeting my obligations. It does have great perks though - like working in your robe when you're sick.

    Because I work from home just a few hours a week, our routine is that my husband cares for our daughter during part of that time. This particular day, his sleep attacks kept him from doing that as well as he usually does. The attacks weren't his fault, of course, but taking care of our daughter, working, and trying not to pass out at my desk really put a damper on my day. By that afternoon, I'd had enough. 

    I was angry. Although I sigh now, and roll my eyes in embarrassment, here were my exact words that day:

    "You know, our lives revolve around your illness. The one day out of 500 I get sick, and I get no help at all. This isn't fair."

    I didn't yell, but I didn't have to. The look on my husband's face told me how much my words hurt. At that moment though, it didn't register. I was mad, steamed, hot, - literally - I had a fever of 103. I attribute my sudden callousness to a fever-addled brain. The next day, when my temperature was normal, I was able to apologize and mean it.

    But I think the damage had already been done.

    That's the thing about changing your mindset. You can't just change the way you view things on one topic. It has to be all-encompassing. I can't agree to forgive my husband's forgetfulness because of his narcolepsy, changing my mindset from him just being careless, but not change my mindset when it comes to his ability to help me when I'm sick. It's going to take real effort to remember that narcolepsy is always behind the scenes somewhere. I was disappointed in myself for treating my husband the way I used to, before his diagnosis. Then I realized something. I'm imperfect. I'm going to make mistakes every now and then, but I can use those mistakes for our benefit. The next time I get sick, I know not to push myself to do my regular chores, and to call someone for help if I need it.

    Then no matter how badly I'm feeling, I'll remember that my husband is not to blame.

    Friday, October 1

    Narcolepsy and Fiscal Responsibility - Taking the Reins

    In our household, I'm responsible for managing the budget. This includes paying bills in a timely fashion, distributing our modest resources wisely, and making sure we live within our means. Now I'm no math whiz, and balancing our budget on a regular basis is definitely a challenge. Despite my best efforts, sometimes I make mistakes. It would be nice if I could share the responsibility with my husband. Actually, I wouldn't mind if I could let go of the whole thing and let him handle it. With my husband's Narcolepsy, however, that would be impossible.

    My husband is terrible with money. It's not that he's unintelligent or intentionally careless, but the tedium of pinching pennies is hard for him to keep up with. Before his diagnosis, I thought he was just irresponsible. When I wanted to discuss anything money-related, he made excuses as to why he couldn't talk about it. When I could get him to sit down with me, he always fell asleep before our conversation ended. This frustrated me immensely, and it got to the point that I stopped discussing family finances with him altogether.

    Post-diagnosis,  I learned that stress detrimentally affects my husband's narcolepsy. Any sort of intensity, be it laughter, anger, or tears, worsens his symptoms and makes him instantly tired. So discussions about money are extremely difficult for him. In a way, I was relieved to know the reason why my husband couldn't help me with our finances. It was better than thinking that he just didn't care.

    On the other hand, now I had to accept the idea of permanently handling the budget. Over time, I've learned a bit and now find it much easier than I used to. Although it's still a stressful part of life, I can handle the stress a lot better than my husband can. I also no longer feel the need to exclude him. Instead, I update him when I feel that he can handle it. 

    And when he can't, it's not the end of the world.

    Saturday, September 25

    Narcolepsy and Marriage - When It All Falls Apart

    Just a couple of years ago, I really didn't think we'd be celebrating our wedding anniversary this year.

    At times I wasn't even that concerned about it. I wasn't angry or sad or spiteful... I just didn't care anymore.

    In our family, wedding anniversaries are a big deal. My parents have been married for 33 years and every year, we try to celebrate the longevity of their love. After all, without it, we wouldn't be here. Well, my husband and I had been married for a few years when I thought -

    I just can't do this anymore.


    I felt myself giving up, but I wasn't even really sure what that meant. Did I have plans to leave him? Divorce? Take our daughter and disappear? No. Instead, I think I was planning a separation. An emotional separation that would mean we'd both live in the same house, eat at the same table, and even sometimes sleep in the same bed. 

    But my heart wouldn't be in it.


    Have you ever known anyone who was in a loveless marriage? I can't think of a sadder scenario. Two people who at some point in time wanted to be together more than anything. They were so in love they declared it to the world by getting married and uniting their lives. What a beautiful arrangement marriage is! Unless the love begins to die.


    Fortunately, I didn't emotionally separate from my husband. Instead, I did something that I didn't want to do. I told him exactly how I felt. Without screaming or name-calling, accusing or berating, I just told him that I felt like our marriage was falling apart. Something was creating a crack in the marriage and that crack was becoming a vast chasm that was widening every day. So we talked and planned and saw a doctor, and soon, my husband was diagnosed with Narcolepsy. 


    That diagnosis changed everything.


    Now there was a reason for his behavior, his lethargy, his mood swings... but the hardest hurdle would now be changing my mentality. I had to start thinking about how to save my marriage and fight our common enemy. I recommitted to my husband and our relationship. It wasn't easy. I'm always reminding myself that my husband didn't ask to have this illness. He hates it more than I do. It's a battle, but it's worth it.


    Our anniversary last week was the best one yet.



    Tuesday, September 14

    When the Life You Live Gets In the Way of the Life You Want

    It wasn't until today - this evening after I'd put our daughter to bed to be specific - that I thought, 'Oh right, blogging.' Yeah, it's been that busy. 

    Isn't it interesting how we feel like Life is getting in the way?

    I am an unpaid volunteer. My husband and I work as part of an international organization of unpaid volunteers and I love it. It is my life's work, my career, my priority. From September through November, I'll be devoting extra time to my volunteer work which means less time for other things.

    Including my blog.

    The truth is, I was feeling sort of disappointed in my blog in some ways. I really wanted to start this story of a family living with narcolepsy because I thought it would help my husband. But honestly, I'm not sure that it can yet. I think he's in a place in his life where he doesn't want help with his illness. I don't think he's adverse to receiving treatment or taking medicine, but only on his terms - which are often not what's best for him. It's a situation that is probably very common to many; no one can force you to take care of your health. Whether it's losing weight, depression, cancer, spiritual health - if you're not ready to face it head on and fight back, no one can do it for you.

    So I got a little discouraged. It happens.

    Then I thought of all of the kind words I've received from people following this blog, or those just dropping by. That makes ME feel good and I appreciate that. Let me tell you a little secret: for all of my bravado and positivity here, being married to someone with narcolepsy is really hard. I'll be the first one to admit that. Sometimes I feel like a single parent. Sometimes I get lonely. Sometimes I just get tired of planning our lives around my husband's illness. BUT...

    but...

    I love him.
    I want him to be happy. I want him to feel safe in this marriage. That means I'm not standing at the door with my bags packed, waiting for the last straw to drive me away. It means that I want to be here, even when it is hard, or I'm tired, or I feel like I never want to hear the word narcolepsy again. I don't want him to feel indebted to me and I want him to stop apologizing for something he can't control. I just want him to know that it's not that I love him even though he has narcolepsy. I love him. That's all.

    Maybe I can get him to read this blog.

    Narcolepsy and The Medication Nightmare

    I think we've established that there's no cure for narcolepsy. 

    There are however, several medications that are used to treat narcolepsy and it's friends. My husband has only tried a few so far, but the differences between them are astounding... and  a little scary.

    Upon his initial diagnosis approximately 2 years ago, he started on Provigil. This was a drug that we'd never heard of, but then again, we didn't know a whole lot about narcolepsy either. I liked my husband on Provigil. He seemed like himself. That may sound silly, but it's the most accurate way I can put it. You see, narcolepsy often turns him into a different version of himself. He's muted and distant, like a faded photograph that you have to hold at an angle to see. It's like he's not all there - and in reality, he isn't. But with Provigil... wow, what a difference! Suddenly the photograph is in color, sharp and clear - it was great! For me, anyway. For my husband, it was just OK. The side effects included headaches and stomachaches which were quite bothersome, but went away over time. We thought we'd found a viable solution.

    Then our health insurance got in the way. 

    With insurance, the amount of Provigil my husband was prescribed amounted to about $400 per month. The cost was way beyond our modest budget. Just in case you didn't catch it before - that was with insurance. Suddenly, Provigil wasn't the answer anymore.

    Next up, Aderrall.

    Initially, it didn't seem  so bad. It kept him awake and alert and we didn't notice any side effects right away... It definitely wasn't like Provigil, but at least he was awake, right? That was when I learned that there's a lot more to treating narcolepsy than keeping a person awake. I've already gone into detail about how much I hate Aderrall, but I can never say it enough. At least it was cheap, I guess. With our insurance, it comes to about $12 a month.


    Most recently, my husband was prescribed Nuvigil. He said that he felt the difference right away. Although I'll go into more detail in a different post, suffice it to say I loved him on it... but it didn't last long.The drug, I mean. The amount that he was prescribed was a free trial, and after that, we were on our own. Unfortunately, insurance doesn't cover it - at all. Fortunately, we're not the only ones who can't afford it. Drug manufacturers of Nuvigil have created a prescription assistance program that will help cover the costs of the medicine. We're in the process of applying for that.


    It is a nightmare, finding the right medication to treat a chronic illness. With narcolepsy, one has to be so careful. A drug that may keep you awake might also trigger attacks of cataplexy. A drug that helps with cataplexy may make the night binges worse. It's such a delicate balance...

    ...but so worth it.

    Tuesday, August 31

    I'm Glad It Ain't Me - A Confession

    I have a confession to make.

    I'm glad I'm not the one with narcolepsy.

    This doesn't mean that I wish my husband ill - I'm not psycho - but of the two of us, I'm glad it's not me.

    There. I admitted it.

    If you're wondering why, it's because I don't think that I could handle it. I have a slightly manic personality. I'm always busy, always moving, and it's very difficult to turn off my mind - even to sleep. It's actually a little bit of a problem sometimes. It takes a whole lot for me to relax and even more to enjoy it. I'm a perpetual list maker, multi-tasker, Superwoman wannabe. I can barely keep up with myself as it is... if my brain and body wouldn't (or couldn't) cooperate with me, I think I'd go nuts.

    Also, I'm good at taking care of people. Partly my maternal instincts, partly just my nature, I'm a good caregiver. I'd much rather play nursemaid than be taken care of.

    That said, I can't wait until no one is ever sick, including my long-suffering husband, who tries his best to live his life - heavily altered by narcolepsy. Altered or not, it's still his life...
    and I enjoy being a part of it.

    Sunday, August 29

    Step One - Find A New Doctor

    I have officially declared myself to be my husband's advocate. What that means exactly, I'm still working on, but for now it means helping him.

    The most important help for the treatment of narcolepsy - or any other chronic illness - would be finding a good doctor. A doctor who not only understands the disease, but is willing, able, and eager to help you find treatment for it. My husband's current doctor is not that guy.

    In the past two years since my husband's diagnosis, I can count the number of times he's had a conversation with his current doctor on one hand. Now he's visited the sleep center where the doctor is located dozens of times, but rarely actually gets to see the doctor. This is because the doctor is never there or too busy to see my husband during his scheduled appointments, so instead my husband talks to the nurse on duty. His appointments go something like this:

    They weigh him, take his blood pressure, and ask, "So how have you been feeling?" My husband tells them any symptoms he's been experiencing - or he doesn't. Either way, the result is the same. He gets his new prescription and leaves. Even when he tells them that things aren't going so great - which they often aren't - the visits are very, very brief. Even when my husband repeatedly asked to have the pressure on his CPAP machine adjusted - he was waking up gasping at night, even with his mask in use - they never called back, never returned messages, and of course we never heard from the doctor himself. This led to the night my husband could've died. They always mailed out his prescriptions late. Despite reminder phone calls from us a week in advance, the prescription would inevitably arrive 2 -3 days after my husband had already run out of his medicine. This led to an ugly cycle of sudden withdrawal which wreaked havoc on his mental/emotional state.

    Now I'm sure you understand Step One: find a new doctor.

    My husband has an appointment with our family doctor in a couple of days. I'm going with him. I've made a list of things to discuss with the doctor, including the fact that the specialist we're seeing isn't doing anything special. He's not even doing anything helpful. Hopefully our family doc will be able to recommend someone else.

    Someone who cares.

    Friday, August 27

    A Narcoleptic's Guilt

    Image courtesy of bigjom/FreeDigitalPhotos.net

    My husband apologizes a lot.

    I didn't notice this until a couple of years after we'd been married. I figured it was a quirk. We'd often have those conversations that are parodied on TV:

    "I'm sorry."
    "Why are you sorry? Stop apologizing."
    "I'm sorry, I'll stop."
    "You just did it again!"
    "Sorry..."

    ...and so it goes.

    Over time, I realized something. He apologizes sincerely, because he feels guilty. He feels guilty because his illness is a weight that prevents him from being the husband he envisions in his own head.

    That's pretty deep stuff right there.

    Imagine that - in your mind, you should be THIS. Whatever THIS is for you as a wife, husband, friend, sibling, employee, you have a mental picture of what you should be.

    But you can never be that.

    It isn't your fault, so why feel guilty? This really made me pause when I realized how my husband was feeling. Every day, he felt like he wasn't doing enough. Every day, he took stock of his failures. Lists unchecked, chores left unfinished, projects abandoned. Day by day, it stacked up - this pile of failures. It's his pile, and only he knows how tall it stands, but for him, it's always there. That makes me so sad for him because that is certainly not what I see. I'm so proud of him for getting up each day and persevering despite his constant fatigue. I don't know how he does it sometimes.

    As if the weight of narcolepsy wasn't enough to bear, he has the added burden of guilt. Hopefully my bearing some of the load will allow him to breathe.

    Wednesday, August 25

    Narcolepsy and Depression - A Natural Combination

    Narcolepsy is depressing.

    Picture the life: You are intelligent, love to be active, involved, affectionate, and funny. But your illness makes you dull and slow. Mentally lethargic, you'd rather just listen to the conversation rather than participate. You can sometimes make it to the party, but the first thing you need to do is find a place to nap.

    Such is the life of my husband, the narcoleptic.

    Understandably, he gets down about his condition. A born list-maker, he always has a million things he wants to get done each day. Realistically, he often has to settle with just getting through the day. This frustrates him and sometimes saddens him. Many times he gets very sad. So sad that he feels hopeless. So hopeless that he feels like giving up. He swings from ranting to crying and back again, in an exhausting cycle of emotions that drains us both.

    That's depression.

    My husband didn't think he was depressed. He thinks that he's just "messed up" sometimes. While I certainly respect his opinion (it is HIS body, after all), I vehemently disagree. See, about 10 years ago, I was clinically depressed. Major depression was a large part of my life for many years. Too many. I spent years seeing psychiatrists and therapists, participated in group therapy, tried several different anti-depressants, and was even hospitalized a few times.

    Nothing helped.

    Eventually, I decided that if I was going to get well, I'd have to take matters into my own hands. When I did, I slowly got better and now all these years later, I know I made the right choice. But that's another post. My point is that, if nothing else, I recognize the symptoms of depression. I recognize them like I recognize the facial features in a photograph of someone I once hated. Someone who stalked me relentlessly, teased and tortured me, and fought tooth-and-nail when I was finally able to push them away. Yes, I know depression.

    So what to do? If you suspect that someone you love suffers from depression, can you force them to get help?

    No, but you can show them what healthy looks like.

    In describing my experience with depression to my husband, I saw recognition in his eyes. Now I just have to introduce him to something else.

    Hope.

    Monday, August 23

    Living In Your Head Without Anything to Numb You

    Today I realized that I listen to Sia a lot. She's a musician who has a lovely voice and wonderful arrangements, but I like her so much because she sings about feelings and such. So today I was listening to "Numb" which is an oldie but most definitely a goodie. The song is really (in my opinion) about someone she loves and wants to be close to, but they'll first need to stop numbing themselves... with drugs, food, alcohol or whatever - she doesn't mention any of those specifically, that's just my take.

    The song's refrain is "It has to end to begin." In other words, her loved one will have to stop doing whatever it is that's numbing them to "begin" a new chapter in their life. That's what I think re: my husband's current lifestyle. I think some things will have to end in order for him to begin to thrive despite having narcolepsy.

    It isn't that I think he's failing, but he's just... surviving. I want him to thrive despite his health conditions. I believe it's possible or else I wouldn't be trying so hard to help. But who am I to force him to change things? Besides, he was only diagnosed with his illnesses 2 years ago. I think he's still getting used to the idea, actually.

    When your chronically ill spouse has the mental, emotional, and physical energy to change, be there to help - hold their hand if necessary. Until that time, support them in what they can do now. That's what I'm trying to do. I want my husband to try some new treatments, find a new doctor, get off his current meds... but right now, he can't motivate himself to do those things. He's just trying to make it through each day. Until he's ready to try some new things, I'll keep researching and reading and blogging... and holding his hand.

    *For the lyrics to the entire song "Numb" by Sia, you can click this sentence.

    Saturday, August 21

    How to Have a Conversation With a Narcoleptic

    Image courtesy of Boykung/FreeDigitalPhotos.net

    It sounds like the opening to a really good joke, doesn't it?

    If you don't already know this, a person with narcolepsy is often tired and sleepy. But that's not all. They often suffer from problems with concentration, short-term memory loss, irritability, and mental confusion. Imagine having all of that going on and try to hold a normal conversation.

    It ain't easy.

    With my husband, I've learned to repeat things. A lot. It's not that he isn't listening or didn't hear me. It's just that it didn't quite register. Imagine his mind is a sleepy, distracted person trying desperately to play ping-pong. If I fire the ball at him, he definitely won't hit it, but if I lob it gently over and over, eventually he'll reach out at just the right moment and voila! He gets it.

    Then there are the other times.

    Other conversations are just the opposite. By nature, I'm a fast talker. No, I'm not a swindler - I just speak really quickly. Over the years I've learned to slow down and let people get in a word every now and then, but I never have a problem spitting something out. Every now and then though, my narcoleptic husband out-talks me. Excited and eager to share his thoughts, he impatiently trips over his own words in a rush to get them all out there. It's like verbal ping-pong, it's so fun talking to him in that mode. Back and forth we bounce ideas off of one another, laugh at impromptu jokes, and frequently apologize saying, "I'm sorry, go ahead," when one of us gets too excited and interrupts the other.

    It's weird, but that's narcolepsy.

    Of course I prefer the times when my husband is more articulate and engaged in the conversation. I fight impatience when he has to speak slowly, when there are lengthy pauses while he fights to remember what he was saying, dead silences as he contemplates an answer to my easy question. At those times, I know he's just a prisoner. Narcolepsy is holding his brain hostage once again.

    I still haven't figured out the cost of the ransom.

    So for those who genuinely want to know how to talk to their friend, co-worker, or loved one with narcolepsy, the answer is simple: be patient. If they stumble, forget, or ask you to repeat, just be patient and wait for them to hit the ball. They may speak slowly this time 'round, but the next time, you may just need to get your paddle ready.

    *For a very insightful view of how a person with narcolepsy sometimes feels trying to converse with people, read this blog post from Confessions of a Narcoleptic.

    Thursday, August 19

    Vow - What It Really Means

    I'm not just going to tell you that the dictionary defines vow as "the words said when making a formal pledge." I'm not only going to mention that the origin of the word one refers to one who makes a sacrifice, or list the synonyms of vow being oath, promise, and guarantee. Instead, I want you to think of times you've heard the word actually used.

    Probably only on special occasions, right? Like wedding ceremonies.

    When you utter those words, "I solemnly swear" or some variation thereof, it may seem romantic and meaningful then. But what about later? When do you get to take back your vow?

    You don't.
    Image courtesy of Boykung/FreeDigitalPhotos.net
    That's the very nature of a vow. The whole point is that you are promising that you are going to do what you're claiming you will... no matter what. If you vow to love someone and stick with them no matter what happens, then that's what you do as long as you're alive/able to fulfill your vow. In Biblical times, intentionally breaking a vow often received a punishment of death. Throughout history, dissolution of wedding vows was only acceptable if one mate committed adultery or of course, if one died.

    We live in very different times.

    Now we live in an era when breaking a vow is actually more common than taking one seriously. Today reasons for divorce are so trivial that it would be laughable if it weren't so sad. So what happens when you marry someone who appears to be perfectly healthy but they develop or are diagnosed with a chronic illness? Are you allowed to break the vow you made to stand by them in sickness and in health? Are you obligated to care for them forever? Consider a few examples:

    Recently featured on a segment of 20/20 on ABC, Trish and Matt have been married for 13 years. When asked why she didn't consider leaving her husband, who developed narcolepsy and cataplexy during their marriage, Trish proudly stated: "I happen to love this guy." You can view their story HERE.

    For Corey, who blogs about being a good husband, when people tell him he's brave for marrying a woman he knew was chronically ill, he says, "It's not really a bravery thing, it's a love thing."

    For me, it's a no-brainer. I promised to try to be a good wife and love my husband come what may. Well, may has come and I'm not going anywhere.

    Tuesday, August 17

    Does Narcolepsy Make It Ok?

    After my husband slammed the door in my face, I dropped my head and stared at the floor for awhile. When our daughter asked "What's wrong? Why is Papa angry?" I gave her a brief explanation and quickly distracted her. But later, she came back to it, asking "Is Papa angry?" My response included "It's OK," before directing her attention to something giggle-worthy.

    But is it OK? Does having narcolepsy make it OK to treat your family poorly?

    Here's the scenario in a nutshell: the sleep center that "treats" him didn't have his prescription ready for pickup. (In the past they mailed it, but we put a stop to that when it was sent late every month). Before he drove all the way back there, I suggested we call first. He refused. I insisted. He refused again. We went back and forth for a bit, in an I-totally-disagree-but-I'm-calm way until he suddenly shouted at me, slammed the door in my face, and stormed to the car. I went outside, waving to him, but he ignored me and drove away.

    I just wanted to remind him: don't drive angry.

    I'm not one of those people who thinks an argument is the demise of a marriage. When two imperfect people live together, disagreements happen. But yelling and slamming things isn't good for any relationship unless you're WWE partners.

    So is it narcolepsy's fault then?

    I'm pretty confident that my husband will apologize later, and explain how he feels w/out his meds. I'll accept the apology and gently urge him to allow me to help him more. To be an advocate, I have to be allowed to help. I wanted to deal with the sleep center today, but he chose to go without me. I wanted to call to make sure that his 2nd
    Image courtesy of David Castillo Dominici/FreeDigitalPhotos.net
    visit there wouldn't be a wasted one, but he wouldn't allow that either. No one likes to be made to feel incompetent, and I'm certainly not trying to make him feel that way.

    But I'm not liking the way I'm feeling now either.
    The answer? No. Nothing ever makes it "OK" to treat people you love like dirt. But sometimes there are valid excuses.

    I'll let my husband give his later.

    Sunday, August 15

    Narcoleptic Does Not Equal Lazy

    A narcoleptic may be tired, but that doesn't mean that they can't get things done. The other day my husband did chores, completed a repair on the car, ran errands, took our daughter on an outing, and was able to stay awake at the dinner table.

    Image courtesy of Ambro/FreeDigitalPhotos.net
    When we moved, my husband pushed himself all day in the hot sun until our large moving truck was empty and all of our furniture was (roughly) in place. Before the group of people we had helping us left, he passed out. Literally.
    He collapsed, unable to get up, and slept for hours right where he'd given out. It wasn't until that evening that he was able to struggle to take a shower and collapse again - this time into bed.

    So although my husband can at times force himself to keep going when all he wants to do is sleep, it isn't good for him when he does. It only intensifies his symptoms and sometimes makes his cataplexy more severe.

    Although the temptation may be to push himself until he drops, it just isn't a lasting solution. The recovery is just too taxing.

    Friday, August 13

    Narcolepsy Is Absolutely Not Contagious... Right?

    I've been very tired lately.

    It's funny how a lack of sleep is the last thing we consider when feeling unwell. I considered everything but sleeplessness as a reason for my malaise. Then one day - I fell asleep.

    I never fall asleep, even when I should. But this day, I fell asleep in the middle of the day, quite unexpectedly.

    Apparently, I need more sleep.

    It's makes perfect sense. Sleeping with someone who can never get a good night's sleep is bound to affect their partner. Not to mention we have a toddler who sometimes decides to wake up at 3am. It's hard to predict when I'll go to bed though. For instance, last night my husband called home around 11:00pm to tell me that he'd have to nap before he drove home. Worried, I waited up for him. I didn't get to bed until 2am. Our daughter gets up at 6.

    If I'm going to be an advocate for my husband, I'm going to have to take better care of myself. Isn't that the first rule of care-giving? The caregiver must take care of self first. That's going to be hard for someone who considers her family's needs before her own and feels guilty if she doesn't.
    For starters, I've begun painting again. I started a series of ACEO (Art Cards, Editions, and Originals - art the size of baseball cards) with different themes, including narcolepsy.

    I feel better already.

    Wednesday, August 11

    I Hate Adderall... and It Hates Me

    So last night I finally told my husband how much I hate his medication.

    Adderall.

    If you could hear the loathing in my voice when I spit out that word...

    My husband has narcolepsy. That means he is often sleepy, tired, or mentally drained. The solution to that would simply be to wake him up, right?

    Wrong.

    The solution actually does not currently exist as narcolepsy is incurable (for now). But there are several treatment options available, including a variety of medications that can help alleviate or lessen symptoms. Unfortunately, I don't believe Adderall to be one of those for him. Although it does keep my husband awake sometimes, the side effects are so extreme that the moments when he is lucid aren't even worth it.

    Here are some of the benefits of Adderall:
    • Improved concentration
    • Mental alertness
    • Appetite suppression (some may consider that a benefit)
    That's the effect I can see it has on my husband. Here are the side effects:
    • Irritability
    • Inability to sleep
    • Teeth grinding
    • Loss of appetite
    • Agitation
    • Mood swings
    • Depressed moods
    • General anxiety
    • Increased desire for nicotine (in ex-smokers)
    Image courtesy of Stuart Miles/FreeDigitalPhotos.net
    See the difference? I'd rather have my un-medicated, sleepy husband who is at least normal to a certain extent than the alert but antsy, unpredictable guy Adderall makes him. Last night when I told him exactly what I thought of his medication, I felt like I was confessing to hating one of his close friends or something. His reaction was similar. He sighed, admitting that he knew it wasn't the best for him, and he was already considering letting it go. Like telling the friend who isn't good association, "Sorry, man. We can't hang out anymore."

    So now as he weans himself off of this drug, we're going t figure out what to do next. Until then, good riddance.

    Monday, August 9

    The Narcoleptic Parent - Dangerously In Love

    Image courtesy of arztsamui/FreeDigitalPhotos.net
    Can someone with Narcolepsy really be a good parent?

    My husband and I have one child. We adore her, dote on her, and watch the sun rise and set on her. She is a precious, genius child - and I say this with absolutely no bias at all of course. She is 3 years old. Because we have planned for just one child, ours is a very relaxed family in which she is the centerpiece. She's like the playing card that makes that cool sound as the bike's spokes turn 'round.

    Notice that I said that we adore her.

    I know that my husband loves our daughter. I'm also proud to say that he's a very good dad. He's never hesitant to get down on her level to play with her, read with her, or make up silly songs. I like seeing them together. As any mom would understand, it does my heart good. When Narcolepsy takes over, he struggles to treat her with love and kindness, even when he's tired or irritable. Sometimes he fails at this, but then again, sometimes I do too.

    But I've never left medication within her reach.

    This is a recurring problem for us that started about a year ago. When my husband was taking Provigil, this never happened. It was when he was switched to Adderall that the issues began. One evening, I was washing dishes when my then 2-year-old walked into the room chewing something. Immediately, I opened her mouth and wiped out tiny pieces of something orange and chalky. The color looked familiar, but I just couldn't place it. I investigated - checking each room, looking under furniture, going through her toy box... nothing looked even close to what had been in her mouth. I saved the fragments in a napkin and considered calling Poison Control. Because she was acting completely normal, instead I called my mother. Hours later, my daughter was still acting normal - except... she seemed a little hyper, she refused to eat or nap all night, and then she started to move her mouth in a weird way. It was barely noticeable, but eventually I realized that she was grinding her teeth! Then I knew. She had eaten one of my husband's Adderall pills.

    That night was terrifying, but it could have been so much worse. Because I had wiped most of the pill out of her mouth, it was determined that a hospital visit wasn't necessary unless she started exhibiting certain symptoms that would indicate she was having an adverse or allergic reaction. I was instructed not to leave her unattended, and when she did fall asleep, to watch her breathing for several hours. Suffice it to say it was a long night. My daughter wasn't able to fall asleep until the next day. By then, my whole family was exhausted but relieved. She was OK.

    Although I was initially furious with my husband, I got over it. It was an accident. He dropped a pill on the floor and didn't notice. Our daughter was fine, he would be more careful, life would go on. I let it go.

    Until it happened again.

    This time I found several pills on the floor of the car and got to them before our daughter did. The next time they were in-between the cushions of the couch. The next time the bottle was on the living room table. The next time I found a pill on the floor of the bathroom. Most recently, the bottle was on the sofa in the living room. Because no pill bottle is truly, absolutely child-proof, I consider leaving a bottle of prescription medicine within her reach just as dangerous as leaving a single pill.

    We've had several discussions about my husband's carelessness. I know that he doesn't mean to put our daughter in danger, but that isn't the point. He resists any suggestions I make to keep his medication in one particular place because he prefers to keep it on his person. This also means that he sometimes leaves his medicine at other places and then doesn't have it when he needs it. Narcolepsy makes my husband incredibly forgetful. Believe me, if you aren't familiar with narcolepsy, you can't imagine. He literally forgets things all the time. It drives him nuts. Lists and nagging don't help - so his frustration with his memory is hard to watch. That's why he prefers to keep his medicine with him at all times. Otherwise, he might forget to take it. I'm sure there's a solution that will work for our family - we have yet to find it but I know it's out there.

    As for my question - can a Narcoleptic really be a good parent? I think the tone of that question is a little inflammatory. Would I ask, can someone with cancer be a good parent? Can someone suffering from depression be a good parent? Can someone with any kind of chronic illness be a good parent? How about, Can someone out-of-shape, undereducated, poor, or ______________(Fill-in-the-blank) be a good parent? To me the answer is obvious. My husband knows that he can do better keeping our daughter safe. And he's willing to try. So no, maybe not everyone with a chronic illness is a good parent. Maybe they simply can't be because their illness is too debilitating. For others, maybe they do the best they can and are willing to try. To me, that's a good parent no matter what sort of health they're in - that willingness to try.

    Saturday, August 7

    Narcolepsy Haiku

    From Savage Chickens


    Everyone is familiar with haiku, right? In case you aren't: familiar with this beautiful poetry form: "Japanese haiku have been traditionally composed in 5-7-5 syllables. When poets started writing English haiku in the 1950's, they adopted this 5-7-5 form, thinking it created a similar condition for English-language haiku. This style is what is generally considered "traditional" English haiku." Taken from AhaPoetry.



    From Literarious
    Last night was... not good. None of us slept well. I had a terrible nightmare last night which was quite unusual for me. I can't even remember the last time I had one. It was really awful... I thought that I was going to describe it but I can't yet. So rather than blog about it, which is what I really want to do, I'll post some of my favorite haiku. I love them. I try to write one a day. Aren't those awesome? That cheered me up already. And here are mine:


    N Haiku #1
    -------------------------
    The Narcoleptic -
    misunderstood often, true...
    but forever loved.

    N Haiku #2
    -----------------------
    You hallucinate -
    your demons alive, breathing
    our love will slay them.

    Thursday, August 5

    Yes, Sleep Disorders CAN Kill You

    Jimi Hendrix. From Johannas Visions

    Jimi Hendrix, John Bonham, Anna Nicole Smith... my husband was almost on this list. People Who Have Died Choking on Their Own Vomit.

    Officially it's called aspiration of vomit, which means that a person literally breathes in their vomit. This can cause breathing trouble, obviously, but it can also lead to choking, pneumonia, or asphyxiation. It happens most often when a person is too inebriated - either by drugs or alcohol - to realize that they're vomiting, probably because they're unconscious.

    It can also happen when you suffer from sleep apnea and sleep paralysis.

    I never knew that combination could be deadly. No one ever cautioned us either. But one night, it nearly cost my husband his life.

    John Bonham. From DrummerWorld
    This past March, my husband and I went to bed early. He had taken the weekend off so that we could attend a religious assembly, so we went to bed early in order to get up early the next day. A few hours later, I jerked up in bed, startled awake by the strangest, scariest sound I've ever heard - to this day the thought of it gives me chills. I didn't immediately realize that it was my husband. In fact, I couldn't place it at all. Terrified, I turned on the lamp and saw my husband jerking in our bed, vomit on his face and chest. I screamed his name and tried my best to help him sit upright or at least turn over. When he was able to move on his own a couple of minutes later, he exploded from the bed, rushing around the room still making that horrific choking sound.

    I admit, I didn't do the right things. I didn't call 911, I didn't administer the Heimlich maneuver, and I didn't act calmly or rationally. Instead, I kept screaming, "What's wrong?!! Honey, what's wrong!!!" After several minutes of this, he gestured for pen and paper, which I promptly got for him. With shaking hands he wrote that he must have gasped in his sleep (as he often does), and started choking. He then regurgitated and since he couldn't move right away, he started to choke on the vomit in his throat.

    Concerned that he may have breathed in some of it, I wanted to call 911, but he refused. We argued a little, but we were both so shaken that I gave in. He couldn't talk for a couple of hours and when he finally could, he voice was raspy and strained. When he was able to lay down again - on his side - I called his doctor.
    AnnaNicole Smith. From The Sheila Variations
    "I know it's after midnight and no one will hear this until hours from now, but I'm calling because my husband almost died just now and I'm a little upset," was my angry intro to the lengthy message I left. My husband is being treated at a local sleep center. I use the term "treated" with contempt. For over a year, they've done very little to help him. Very, very little other than writing prescriptions for a drug that doesn't seem to be working. My loathing for the "treatment" he's received will be the focus of another post, but suffice it to say I'm unsatisfied. But I never did anything about it.

    Usually they take days to return our calls - if they ever do. Usually we end up calling repeatedly until someone transfers us to someone else who can then transfer us to the right person. After I left that message that night, they called back later that day.

    That night was when I decided to become my husband's advocate. He could've died - that's all I kept thinking about for weeks. I usually sleep with earplugs, but I didn't use them that night. What if I had? What if we had slept separately that night? What if my husband died because he doesn't know much about the disorders that plague him and neither does his wife? We didn't know how dangerous sleep disorders can be until my husband almost lost his life.

    I had to do something.

    Tuesday, August 3

    Cataplexy Isn't Funny In Person

    When our daughter was born, my husband almost dropped her once.

    I was enraged. How dare he risk our child's life by not being aware enough to put her down when he realized how tired he was?

    Looking back, I can't believe how unreasonable I was.

    The first time I remember meeting Narcolepsy's close personal friend, Cataplexy, my husband and I had been dating for awhile. He had this weird habit of taking deep breaths and closing his eyes whenever he was really amused at something. It was like he was trying to keep himself from laughing. Sometimes when I give into hysterical laughter, I get a bit of a piercing headache that goes away quickly. Sort of a laughter-brain-freeze, so I understood his desire to suppress his laughter.

    But he wasn't always successful.

    One day we were having a great time - dancing, laughing, playing around, and in the middle of laughing, he suddenly fell to the floor. Quite suddenly, actually. This was no slow slump or slide down the wall - he fell down like he'd fainted or something. Still laughing, I went over to him to help him up. I thought he was still joking around. I put out my hand.

    From Vector Magz
    "Come on, get up," I said.
    When he didn't move, I stopped laughing and stared. He was just lying there, eyes open, his face still frozen in a smile. It was creepy. He looked like the Joker.
    "Come on, knock it off," I said, and grabbed his arm.
    It took a few minutes, but I finally got him to "unfreeze" and take my hand. By now, I was concerned... and confused.
    "What's wrong? Did you hurt something?"
    He didn't respond.
    "Take my hand, I'll help you up," I said.
    He whispered, "I can't."
    I looked around as if someone could help us, but we were alone. I considered calling an ambulance.
    "Why can't you get up?" I asked again.
    His hand moved in mine - very slightly.
    "I can't make a fist yet," he said.
    Several minutes passed. Finally, he gained enough strength to sit up and I helped him onto the couch. Within 20 minutes, he was back to normal.

    My soon-to-be-fiance was embarrassed and couldn't really explain what had happened to him. He told me that any strong emotion - anger, laughter, fear, even excitement - could cause him to "feel weak" and sometimes even collapse.

    Baffled, I told him that he probably just needed a multivitamin.

    Years later, after his narcolepsy/cataplexy diagnosis, I apologized to my husband for yelling at him the day he almost dropped the baby. I know that accidents happen and I also know how much he adores our daughter and would never intentionally put her in danger. He gracefully accepted my apology, but then I told him that I had a confession:

    Once when I was changing her diaper, she fell off the changing table.

    I swear I don't know what happened! One minute she was on the changing table, preparing for a new diaper, and the next minute she was on the floor, staring up at me with a really surprised look on her face. That's not the best way to discover that your baby has learned to roll over, but it happens. I was frantic but she was totally fine. You know, my husband didn't even get angry - didn't call me a hypocrite... he didn't miss a beat when he said,

    "Good thing we had carpeting."