Tuesday, September 13

I'm NOT Ignoring You

Really, I'm not.

I love the comments you've made, the emails you've sent, the effort you've made to reach out to me.

As many of you know, having a chronically ill spouse is already difficult. Having a spouse whose chronic illness is narcolepsy however - well, that's a different story.

Most people just don't get it.

Most of the people I've met have either never heard of the disease or they may have seen it briefly portrayed in some random (and usually totally inaccurate) movie. When I explain how narcolepsy affects my husband, many people are sympathetic... but they still don't get it. How could they? I don't expect everyone to understand. Our own narcolepsy-educated families struggle to support us and what we're going through. So hearing from people who DO get it is like being surrounded by empathetic friends.

Thank you so very much for your support.

Have you sent me an email and felt miffed that I never replied? Have you left a comment and waited patiently for me to acknowledge you? Well, I'll be honest: it's really hard for me to talk about my husband and his health. Funny, right? This is a blog, after all. But spilling whatever's in my head and interacting one-on-one are totally different to me. My blog is cathartic, and it takes a lot of emotional energy. It forces me to confront certain feelings and helps me to think of the positives. Replying to individuals is harder for me, a lot harder.

I'm working on it. So if you get a totally out-of-the-blue email from me one day, just know that it probably took me a month to write it, and another month to finally send it.

I've saved every kind email I've ever received, though. I love re-reading them - it's very encouraging. Here are some of my favorite thoughts:

" Thank you for putting yourself out there, your entries were helpful to read."

"Your blog is very touching and honest and I have a tremendous respect for you writing down your experiences and sharing them... As a narcoleptic, a lot of the issues you write about are all too familiar to me."

"For the longest time no one believed me about having these disorders..."

"Thank you, thank you..."

I'm not superhuman or especially strong. I'm just a woman who's determined to fight narcolepsy's tendency to destroy relationships. But your support makes me feel pretty invincible.

Thursday, September 8

I Had Some Thinking to Do

 I've been avoiding this blog.
When I began this blog, I had every intention of sharing all of my feelings and opinions regarding being married to a man with narcolepsy. I had hopes of my words being read by someone - anyone else who was experiencing what I was enduring every day. If my thoughts and experiences reached and helped anyone else, pouring out my heart (and guts) online was worth it.

I mention all of that because that's what makes me feel obligated to maintain this blog.

So my last hiatus was intentional. I actually didn't have anything to say! More accurately, I didn't have anything that I felt comfortable saying, despite my anonymity. I know that you don't know me personally. I know that things I say here probably won't get back to my husband.

But he is my husband.

Making certain comments about the man I love just doesn't feel right. So I've been following the old adage of waiting until I have something "nice" to say before saying anything at all. This isn't to imply that things have been terrible since I lasted posted in May...

in June - we had some car issues that month, nothing really major, but things that were annoying enough to render the car inoperable for days at a time. My husband happens to be great with cars, so he worked on it piecemeal until it was repaired and good to go.

in July - remember me mentioning the religious convention that we attend every summer? We attended again this year and this time, my husband did great! I was so pleasantly surprised. He stayed awake for most of the entire program. He also helped immensely with our daughter, managed some assigned responsibilities to help with the convention, and we had a lovely time.

in August - a very busy month! Our daughter had her first kiddie party, my sister announced her engagement, and my family began planning a reunion all around the same time. Also this month, my husband experienced narcoleptic fugue that led to a big mistake on his part. Although that mistake wasn't divorce-worthy, it was something that hurt me (emotionally). Once again I was torn between blaming my husband, or blaming his illness.

September - our wedding anniversary is this month. Last month, things were so trying that I wasn't even sure we had anything to celebrate. Barely making it through each day isn't exactly cause for celebration, right? Or is it? I guess it all depends on your mindset.

As of today, we're doing okay. Not bad, not good, but making it, hanging in there, and fighting for our marriage. For all of you hanging in there with us - thank you.