Thursday, October 31, 2013

Dear Diagnosis..........

Dear Jill, 

Congratulations! You finally have an accurate diagnosis after all these years. Yeah! 

Guess what? It’s only just beginning. I know you are excited to get down to the business of fixing this condition.... But here’s the bad news: you can’t fix it. No, people don’t grow out of it either. Your symptoms may change over time. But, pretty much, this is it. 

Yes, there are medications. But, there are very few, with limited results and they all come with side effects. 

I don’t mean to discourage you. I just want you to have a realistic outlook so you can confront this head on. 

Don’t slide into denial. You’ll do this without realizing it. So I’m just going to warn you against it now. Don’t try to deny that you can get through the day without a nap. Don’t try to deny that you need to take meds. Just accept the fact that you have narcolepsy and do what you have to do. 

Take a damn NAP! I know there is never enough time in the day to do what you want to do and taking time out to nap drives you crazy. But you drive everyone crazy when you crash in the afternoon or struggle with a headache because you didn’t take the time to take a nap when you should. Think of it as an investment. A nap during the day, makes for a better evening with your family. Isn’t that worth it??

Find others with narcolepsy. You’re going to have to go online for this. You’ll feel like the only one out there with narcolepsy. Especially when you start sharing the news with others and they’ll have trouble understanding even the most basic concepts. Also, you need to find other narcoleptics to get ideas of how to best manage your symptoms. 

Find Julie Flygare. She’s a PWN (Person With Narcolepsy) and a marathoner like you! Find her and you’ll find the others. There is a community out there and they need you as much as you need them. Go do this now and then come back and read the rest of this letter. 

Now that you have found the community ask them questions, try things they suggest. Then be sure to share what you learn with others. Someone out there may benefit from your experience. That’s the best thing about community. You help each other out. 

Keep trying different things to find the best way to relieve the symptoms. If you can manage it just by lifestyle, great! Keep looking for improvements. But be honest about your quality of life with and without medication. 

Don’t try to hide symptoms. I know you’ve been called lazy by people in the past because you sleep so much. I know you’re afraid they won’t believe you and just think you are trying to get out of things. It’s only because they don’t understand what it’s like to have narcolepsy. They don’t understand how it feels when the symptoms hit. You look  ‘normal’ from the outside. So they have no way of knowing how the symptoms make you feel inside. 

But what they think doesn’t matter to you. Stop trying to put a good face on it all the time. It’s exhausting and just makes your condition worse. Plus, it’s not a very honest way to live. 

Tell people when you are tired and when you just need to lay down for awhile or not run a million miles an hour and instead find some ‘veg out’ time. Tell them, ‘no, I can’t take on that responsibility right now’. 

“But if I don’t do it no one else will.” 

Yep. That’s right. So it won’t get done. So what. Either someone else will step up to pick up the slack or it wasn’t that important in the first place. Take care of yourself so you can take care of others. Not the other way around.


I wish you luck on your journey. It’s going to be an interesting ride......

3 comments:

REM Runner said...

Wow, I love your letter, Jill. There were so many good reminders in there for me. Especially about saying "no" when I can't take on any more responsibilities. I needed this reminder today.

Thank you for opening up and sharing this letter for our community. I'm so lucky to call you my friend and co-marathoner. ;-)

With love and big smiles,
Julie

Julie said...

Thank you so much for sharing your letter, Jill!

Especially impactful, to me, was the part about "not hiding" your symptoms. I find that, all too often, PWN try to put on a strong, happy, brave face. to make it seem like we've got it all under control. Not only does this not help us to get our rest when we need it, but it also prevents those around us from truly seeing how hard it can be to live with narcolepsy. After all, if we always try to make it look as though we're just fine, how can they possibly understand when we try to explain how terrible we feel?

Wishing you much wakefulness and rest!
Julie Ann

Emillerae said...

love this! thank you for sharing.