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These words are my diary screaming out loud

Friday, March 28, 2014

I am not alone

I've mentioned once or twice before on this blog that I have a sleep disorder. I was diagnosed not long after I got out of the Navy with idiopathic hypersomnia. Most folks have never heard of it - I had never heard of it before I was diagnosed. At the time, my sleep doctor said that he originally wanted to diagnose narcolepsy, but I'm missing a clinical requirement for that diagnosis so idiopathic hypersomnia it would be. So for the past 5 years, I've basically just told everyone I'm borderline narcoleptic. Made it easier for most people to understand - everyone's heard of narcolepsy. Of course, most people believe narcolepsy means constantly falling asleep. Again, I did too. In reality, that's just a symptom. But that's neither here nor there.

When I was first diagnosed the doctor wanted to prescribe a specific drug, but I wasn't comfortable with some of the side effects. I'm in a different place now, so I was ready to talk to my doctor about making the change. In doing my research, I discovered that my crap "insurance" would make that drug $500 A MONTH for the GENERIC, so obviously I'm sticking with my current meds for now. But also in my research, I found a website called Living With Hypersomnia AND a Facebook support page for people with IH and similar disorders. Overwhelmed, relieved... I can't even put words.

Funny thing is, I KNOW how important support groups and things like that are. I have a sister with juvenile onset rheumatoid arthritis. The first time she went to a conference and met other kids like her, even at age 6 she was moved. But I haven't been to a sleep doctor since 2009, and it never even occurred to me to look for something like that for IH. But in the past 2 days, reading other people's stories that sound so similar to mine, and being able to compare some notes, and just be able to vent a little bit and have people understand.

Because that's the thing. People close to me know I have a problem. It manifests itself in several ways, but two of the biggest are excessive daytime sleepiness and the ability to sleep seemingly well for 8+ hours and still not feel refreshed. I am ALWAYS tired. The end. I have to take medication every day to maintain some level of alertness and not fall asleep at my desk. I don't care if I got 10 hours of sleep, it's how it is. Waking up is hard, especially if I'm being awoken and not waking on my own. Yet I still get asked how I can be tired when I slept for 9 hours the night before, or why don't I just take a little nap? I tell them I take Ritalin and they ask if I have ADD. They think I'm joking when I say I have to take pills to stay awake.

But on these forums, and on this Facebook page, THEY GET IT. And it is probably one of the best feelings I've felt in a long time. I have learned more in the last 2 days than I did in the entire last 5 years since I was diagnosed. I almost want to cry, in the best possible way. I can tell my whole story and not have people get bored or not get it or try to make excuses for my exhaustion. There is really and truly something to be said for a support group, even if it is on Facebook.

With all of the stuff going on in my world right now, this has been a little ray of light. It's also helped me not be really angry over the medication thing - I've seen a ton of people say that it didn't work that well for them anyway, or it worked for a little while then stopped, or that the side effects really were unbearable. Just needed to share :)

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