Dear Diagnosis Blogathon

Many people don’t know that I live with a disease called Narcolepsy. Actually many people have heard of Narcolepsy but don’t really know what it is. I decided to participate in Julie Flygare’s  Blogathon Dear Diagnosis and write a letter to myself of my diagnosis day. I really respect Julie. Not only does she live with this disease but she’s managed to finish school, write a book, and is an amazing spokes person that really helps to put things in perspective. Not even 10 years ago Narcolepsy was usually made a joke of on tv shows and movies. There wasn’t much support for it and I believe that many didn’t speak out about there symptoms because they lived in fear of being branded crazy. Thanks to Julie’s advocacy she’s helping many all around the world to open up, speak out and be honest about this strange disease we have to deal with on a daily basis. It’s not perfect but here it is:

 

Dear Melody,

I know it’s a hard day, but I wanted to tell you that the numbness you are feeling will go away. You are not crazy, or possessed (as your old church declared), nor are you lazy. You are quite the opposite. That quiet suspicion that’s been haunting you for so long. You were right. And now you have proof. It’s a good thing, even if it doesn’t feel like it now. I know you feel like damaged goods, that even your best friend and partner doesn’t understand how you feel. Go easy on him. He’s trying to be strong for you. Some days you will be so tired that the ache and the hunger for real rest will make you wish for a more permanent kind of sleep.

But don’t give in. Know that you are a fighter. Every day will be a struggle. Remember that there are much worse things. That despite this, you are truly blessed. That you will even find beauty in being broken. Take joy in the little wonders that you do get. Remember that the good days are worth it.

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Start to seek balance as soon as you can.  Just because you will only have “x” amount of energy to do things in a day, doesn’t mean you shouldn’t make those things worth it. And while we’re at it, go easy on yourself when you can. You’re a mom, a business owner, a volunteer for several charities, a partner, and a friend. That’s a lot for anyone to keep up with. Let go of the feeling that you are always lacking and missing out because you don’t have the energy to do it all. Don’t stress about the little things because it will only make you feel worse. When you look back at all the problems “N” (Narcolepsy) has caused you, with your jobs, relationships and missed opportunities, know that you can’t change any of it. Looking back isn’t worth your time.

If there was one thing I could tell you to really focus on it would be discipline. Learn it! It’s not just something for physical exercise but to help you reach your goals both in the every day with your autistic son and in your chosen career. I hate to break it to you, but there is no magic miracle pill. You’re going to have to try a few until you find what works best for you. They all have drawbacks and that’s why you have to learn discipline in everything you do from eating to making a schedule. Remember that going to bed on time is important. The things you haven’t finished will still be there for you in the morning. Discipline yourself to jump out of bed every day…no matter how hard it is to rise and shine. Not just for yourself but your son as well.

And know that you are not alone. Really, you’re not. You won’t understand what it means until you reach out and find others online and in your community who truly understand because they experience many of the same challenges. It will make more sense soon (look up Julie Flygare) and remember everything is going to be all right!

For more info visit Julie Flygare´s website or click to read other dear Diagnosis letters:

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