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...


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.